Young adults' experiences of oncofertility decision-making to inform the co-development of training content for...

This study aims to present the first phase in the development of a training program for oncology nurses by identifying shared decision-making situations characterized by clinical and decisional uncertainty in oncofertility, as well as the elements required to inform scenario-based training. Young adults diagnosed with hematological cancers may face oncofertility issues throughout their care trajectory, and decisions regarding fertility preservation are often required. However, shared decision-making remains challenging in clinical practice, and constraining perceptions among oncology nursing staff are among the barriers insufficiently addressed in current training programs.

We used a participatory qualitative research-and-development approach. Three 90-min working group meetings with young adults diagnosed with hematological cancer supported the co-development of clinical scenarios designed to reflect authentic decisional challenges and real-world clinical contexts in oncofertility. Meeting transcripts and scenarios were analyzed using content analysis.

Seven young adults diagnosed with hematological cancer participated (mean age: 25 years). Three scenarios were developed, reflecting common challenges such as inadequate information, difficult decision timing, and interactive communication. Analysis identified seven decisional-need components (e.g., misalignment between the decision and life trajectory, diagnostic shock) and ten decisional-support components (e.g., maintaining trust, variation in roles depending on relationship context).

Codeveloping the shared decision-making training content in oncofertility with young adults diagnosed with hematological cancer generated useful, experience-based insights into their specific decisional needs and priority sources of support. These findings provide concrete directions for tailored educational tools and reinforce the value of directly involving service users in creating training content.